Category Archives: Flare/emergency information

Yes, I am alive (updates, PMP, SCS, social services in the UK)

Sorry to make this the 3rd post today but I wanted all the stuff I have to share in its relevant “box”, so had to split it up.  

I am alive, sorry for having been quiet again but as you probably guessed there’s been a bit of a flareup.  I’ve also had a million and one appointments and assessments.  I’ve even been sent a form to fill out to get a form to fill out!  

I think I told you recently I’d been referred to the pain management program.  Well I met initially with a physiotherapist and was told I would be working with the team on a one on one basis for now as I’m apparently not ready for the group PMP.  To me that’s a positive although my competitive side is wondering why lol.

Up to date, I have now seen the physiotherapist twice.  Within these appointments we’ve discussed what I need out of this relationship and moved on now to pacing and my sleep issues, both of which are big issues to many of us with chronic pain.

The physio has talked me through the pacing concept in depth and this ties in with my GP’s decision to refer me for a wheelchair assessment (which I’ll go into further into the post).

For me personally, pacing is going to be difficult.  The idea in the simplest terms is that when you push your boundaries in activities, it has a negative impact on what you can do the next day (or even longer).  It is well accepted that regular activity helps pain, and yet when we continue on trying to be “normal”, we end up in a flareup, stuck in bed.  So how do we change this?  For me, I’ve been told I need to work out for any activity at which point pain interrupts my thoughts and take a step back from that to determine the safe level, whether that’s in distance of walking, time, etc.  Then I can do a rest activity for a small amount of time, and start again.  This in theory increases what I am able to carry out without laying me up and putting me back a step.

So for example, in my case pain interrupts my thoughts very quickly when I’m walking.  Embarrassingly it’s about 2 minutes into a stroll!  The physiotherapist explained to me that all activities in very basic terms fall into four boxes – walking, standing, sitting and lying.  My rest activity can be any one of the other three.  The plan for me is to use a wheelchair as a walker, walk for a lesser amount of time than it would take for pain to become an issue, then use the chair temporarily and start again.  This should in theory make it a lot easier for me to have a day out rather than worrying about finding a public seat, and because I’m not hitting my breaking point, I should be able to gradually increase my mobility without paying for it in days in bed.  There was an emphasis put on doing this regardless of whether I was having a good or bad day.  On good days I am going to be very frustrated and on bad days I will have to kick my arse into gear and get on with it.  I’m ready to do it…..well mentally I am.  The wheelchair is absolutely imperative for me, and this is where the problem lies.

My GP referred me for a wheelchair assessment through adult services (part of Social Services).  I was told they would come out to my house the following Monday but in reality they turned up on the Friday before and I wasn’t in.  Not a problem, they had my mobile number and rang me to sort it out.  At this point I was quite surprised as I had been told this would be an in depth evaluation in and around my home of my mobility needs.  Instead the lady asked me a couple of basic questions on the phone, then told me I’d hear from them when I would be getting a wheelchair.  At this point she told me that the waiting list was well over 20 weeks.  Well, when you’re getting something for nothing you shouldn’t complain but I was really disappointed to be honest as I was dying to get going with my life instead of being stuck within a five minute walking radius of my house.

I am told by my physiotherapist that I can hire a wheelchair through the Red Cross, which is absolutely great.  I’m lucky in that there is a centre just up the road from me, so my sister and I went along to ask for more information.  They will lend me a wheelchair should they have one in stock, but it can only be for 6 weeks.  So it looks like I will have to buy one well before I get a chance to have an NHS one, which is worrying me due to the cost of them.  

The Red Cross also explained to me that most of their wheelchairs aren’t returned by their clients, which in hindsight is understandable but not acceptable.  I suppose people are desperately in need in this area due to the long waiting list through the NHS/Social Services.  However, it is very sad in this day and age that people are essentially stealing from a charity.  Perhaps there’s something to be done there, a bit of publicity for the Red Cross and over the ridiculous waiting time for NHS help.

Moving on to the big appointment that I was dreading – my meeting with the spinal cord stimulator (SCS) surgeon.  The usual process for a consultation with him is for the pain clinic to refer you after all else has failed.  My neurosurgeon had written to my pain clinic recommending they refer me to him, but my pain consultant had refused, saying they never work and wouldn’t be suitable for me.  My GP had then suggested he refer me directly as he (and I) felt that the pain consultant had been hasty in saying no and was biased.  So I went along to this appointment knowing that I would be seen as the difficult patient who had gone over a consultant’s head, and this made me very nervous.  At this point I fully expected it to be a “No”, but I wanted to hear objective information and also be heard.  My pain consultant’s decision had been based on the idea of it not ENTIRELY fixing ALL my problems, and that’s not an expectation I ever had.  I just wanted to explore it and talk about it.  

So, last week I went along.  I went in ready to be told that it wasn’t suitable for back pain, it wouldn’t take away everything and that I wasn’t suitable for a trial.  I explained that I didn’t have those expectations and was a bit gobsmacked by the response.

The surgeon asked me what my main problem was.  I explained I have three types and areas of pain – the back pain, the nerve issues in my thighs and groin, and my sciatica.  I explained that out of all of them the sciatica has the greatest impact on my mobility, which is more important to me than my pain.  At this point he stepped in to explain he has “new technology available” that may be able to target my back pain as well as the sciatica.  In contrast to what my pain consultant saying about the SCS only being able to target a small and localised amount of pain in one limb, the SCS surgeon also explained that in many cases they actually struggle to get the stimulation into just one limb, so he feels that he could even target my burning thighs a bit.  So I went in with no expectations and came out with a bit of hope.  

I’m not saying SCS is definitely for me, but at this point I feel a trial would be extremely worthwhile.  The surgeon says I am an ideal candidate, but that I have to lose weight and be “in the right place” physically and mentally for the trial. 

Ordinarily the process would be to finish the group pain management program before getting a trial, but I explained that the physio had decided to keep me on one-on-one for the foreseeable future, and that this would mean I wouldn’t be starting the group PMP until potentially next May.  So, for me, they are going to liaise with my PMP physio and let her judgement help decide when I’m ready, rather than me having to wait for the group PMP.  I am really pleased and grateful that they were flexible in this.

As a final note, I wonder how many of you have had to apply for a disabled bus pass?  In the past in this area, you would take along your DLA entitlement to their customer services office and that would be your proof.  Now it is different – I visited their customer services and was told I would have to ring Social Services for (yet another) assessment.  I did so and was asked some questions on the phone and told they will be posting me out an application form.  I asked if that was it and they said that form goes back to them and then the transport company send me a form.  So I have to fill out an application for an application form?!  Madness! 

Chin up lovelies, speak soon xx

Flares are so last season

Hi folks

Well you might have guessed from my relative silence recently that I’ve been in a bit of a flare-up, so I wanted to use this opportunity to write about something I’ve been looking into, but haven’t taken the leap with – the flare plan.

The basic concept is to have a plan, not just in your head, of what to do when your pain increases to a level that needs affirmative action.  It sounds fairly simple, but I haven’t got to the point where I am quite organised enough, or even knowledgeable enough, to put the thoughts into a ‘proper’ plan.  I’m still in the “I know what I’m doing……oh my GOD it HURTS, what do I do, what do I do??” stage!  That and I think I had a few preconceptions about whether it was all pointless or ‘shutting the gate after the horse has bolted’, which is something I would invite you to discuss in the comments.   It’s also only recently that I’ve come to realise that these things are going to keep happening from time to time and I have to know what to do other than ploughing meds into my trough and hiding under the duvet (although I suspect those two approaches will make their way onto my plan still!!).

From what I have read, the idea is to compile a list of things you need to remember, or have on you, at times when the flare grabs you.  I have compiled some links that might help you guys to make your own, I will bob them at the end.  The following is a basic set of ideas to add to yours.

  1. A list of medications, timings and dosages that you can take.  We all know how pain can muddle our thoughts and although we consider ourselves self-medicating experts (or I do, dunno about you!), I think it’s fair to say we’re at risk of forgetting what we had and when at times when that pain is blinding.   I do think that this just written on a card might be useful to some but reminders may need to be on mobile phones/watches/from family at this point, so it would be important for a copy of the plan to be available to whoever’s living/working with you, OR timers set on your phone/watch if noone is around or you want to maintain independence (eg. at work).  While you probably won’t want to be setting reminders on your phone while you’re in a lot of pain, make a note of when you took your top-up medication if it was different to normal timing/reminders – a family member could jot it down, or you could even set the stopwatch on your watch/phone so you don’t forget how long it has been since you took them.   Top-up meds are the ones I tend to struggle to remember as I obviously don’t always start taking them at the usual times I take my other medications.
  2. Contacts – who can you ring to help?  Do you have a friend or family member who you’ve arranged to come over when you need or who can talk to you on the phone when you’re feeling pants?  I would also recommend having your GP’s number and other medical contacts so noone has to go hunting them down if they’re needed quickly.  If you have children, or other responsibilities that others may have to take over for you, it’d be worth having a list of contacts relevant to those too.   As a side note to this I have thought it might be useful to have a record of anything that your carer/family/colleagues may need to take over for you while you are struggling, just in case you’re medicated or so sore you can’t remember/communicate what needs doing and when.  Not sure how this would work as part of a permanent printed flare plan but something to consider.
  3. Personalised information on what you know helps you.   So for example if you find relaxing music is a must for you, have a reminder on the plan for yourself or those around you of which CD and where it’s kept.   You might want to remind yourself to focus on your breathing if that helps you.  If you like using a TENS machine, remind yourself to use it, what level, what programme.  It sounds really basic but you might forget in the brainfog of pain.   This is the part of the plan where I started wandering off in my head about how to organise things, and after discussing it with others I’m not alone on this – I want a drawer or cupboard in my bedroom that I know will contain the things I need in a flare at all times regardless, and I also want a miniature ‘box of tricks’ when I’m out and about, probably just the basics to get me home in an emergency.   My drawer won’t just contain my medication, but my TENS machine, heatpack, a damn good book, headphones and my mobile charger among other things.
  4. Exercise versus rest.  A lot of guides suggest having part of your plan dedicated to outlining how much rest you are allowing yourself and how much exercise you are going to keep at during a flare.  Keeping mobile may seem impossible when you’re in a lot of pain, and you won’t hear me lecturing on this subject as I’d be a huge hypocrite.  All I want to do is lie in bed when I’m sore, but I also know it doesn’t help me personally.  I’ve started pushing myself to do a very limited and safe amount of exercise (in my case a very gentle 5 minute walk to our local park, with a sit at the other end to feed the swans, or if I’m totally incapable of that, some stretches in my bedroom) to try and keep myself from seizing up.  I’ve found if I just wallow and lie in bed, my pain takes longer to resolve and I am lower in mood.  I really am a lazy sod, so admitting that I have to exercise even in my own piddling little way, is a big leap!!  I wouldn’t want anyone reading this thinking I was advocating running a marathon when you’re feeling rubbish.  I’m no fitness queen, I’m just determined not to let a flare pin me down for any longer than necessary.
  5. Controlling your thoughts.  You might have gathered that although I’m a bit of a liberal hippy at heart, I also have a Yorkshire/northern attitude towards “arty farty” concepts suggested by people who aren’t necessarily experienced in the reality of this kind of situation.  So you can trust me when I say I’m not trying to pedal any pop psychology, and ultimately this is your plan and you can choose whether or not any of the above pointers, including this one, are right for you.  I have found that in emergencies with my kids/family/friends, I go into an automatic “nurse mode” – the emotions switch off and I just “do”.  If I allow myself into negative thinking, first of all it spirals into panic, and secondly my bossy Yorkshire (?) attitude tells me I’m being a melodramatic idiot (yeah, I beat myself up a bit sometimes).  So I have been asking myself why I let myself focus on how terrible the pain is effecting me when it’s my turn to be the “patient”?  Of course I still do it, I moan to myself in my head that it’s terrible, unfair, never going to stop, and that I can’t cope or am weak, etc.  The result is of course that I’m so focused on the pain and these thoughts that my mood gets lower, I am less motivated and any distractions from my top list won’t work a bit.  So I do think it’s worth mentioning this suggestion, as “arty farty” as it reads at first glance and as much as I haven’t yet put this part into practice.Positive affirmations such as “It will get better soon”, or “This won’t last”, or “I am strong and will get through this” might be a bit of a push to some of us cynics or negative thinkers, to others it might be immensely beneficial.  I would recommend keeping these at least realistic – telling yourself you’re not feeling pain or feel great is not going to get you anywhere.  In my case I’m going to try getting into “fight mode” and that might involve a few choice and profane words directed towards the pain and maybe even myself if I’m being a whinger.  I’m not suggesting any of you try and bully yourself out of your funk, it’s probably not a great idea for most.   My recommendation would be to at least to try and distract yourself from focusing entirely on the awfulness of the situation.   Some might find focusing on surviving the storm, or winning this small battle or that kind of concept easy, others might find it a bit vague.I was advised to remember that chronic pain is most often not a sign of new injury and you have most likely not damaged yourself further by having the flare.   It might help to see it as a reminder from your body to listen to it’s messages, and in the time after the flare it could help a lot to look back at what you consider to be the first signs and potential triggers of what you’ve experienced.
  6. Emergency instructions.   Some people carry a wallet sized card of emergency instructions for medical professionals that are related to their specific conditions and some add it to their flare plan.

OK so I turned the basics into an essay yet again, so I will leave you lot to have a ponder on whether you think the flare plan is a good idea, and if so what you think about the ideas I found from those websites.   Here are the links for anyone who wants to have a read, feel free to message me with any more you find:

Health Talk Online – Coping with Flare-up 

Action on Pain – Plan for Flare-ups

Pain Concern – Flare-up Planning

London Pain Clinic – Coping with Flare-ups and Chronic Pain